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Results from the Department of Health Risk-sharing Scheme

16 May 2014

As this edition of Open Door hits your doormat the preliminary results of the Department of Health Risk-sharing Scheme (RSS) will have been presented at the Association of British Neurologists meeting, and by the next edition we hope the full results will have been published in the Lancet or BMJ.

Why was the scheme set up?

It was set up in 2002 following an assessment by the National Institute for Health and Care Excellence (NICE) of four disease modifying therapies (DMTs) Avonex, Copaxone, Betaferon and Rebif, which concluded that, while clinically effective, the DMTs could not be shown to be cost effective at their then NHS prices.

The RSS was the one of the first patient access programmes that are now a feature of the NHS and its results are therefore of interest to many people. It allowed people across the UK, who met the criteria for treatment, to be prescribed MS drugs on the NHS. A percentage of the people were included in a long-term monitoring study to evaluate the cost effectiveness of the drugs.

The RSS is led by the Department of Health and operates under the oversight of a Steering Group representing the four UK health departments, the four companies whose products are made available through the scheme, the Association of British Neurologists, the UK MS Specialist Nurses Association, the Royal College of Nursing, the MS Society and the MS Trust. The Steering Group is advised by a Scientific Advisory Group.

Why did the MS Trust get involved?

The MS Trust got involved with the RSS because we believed that people with MS deserved access to treatment and to better services. Looking back it is now clear that the RSS ended the postcode lottery for these DMTs across the UK, and has been the catalyst for significant improvements in MS services, thus bringing tangible benefits to everyone affected by MS.

Over 5,000 people with MS have been regularly monitored for ten years – a significant commitment. Neurologists, MS nurses and administrative teams at 72 sites around the country, under the guidance of two clinical leads, have worked hard to provide the necessary data.

Achievements of the Risk-sharing Scheme

Today, approximately 18 per cent of people with MS receive a DMT – a far cry from the 1 per cent in 1999, although still low in comparison with Europe (30–35 per cent) and the USA (50+ per cent).

While we cannot underestimate the impact this has had for the 18,000 now receiving treatment, from the MS Trust’s perspective the most significant benefit has been the unprecedented growth in MS services precipitated by the scheme, such as:

•In 1993 there were 3 MS nurses; by 2001 this had increased to 80, but it was the RSS which was the catalyst for an increase to over 230 MS nurses in the UK today.

At the start of the scheme there were about 25 specialist MS centres in the UK. There are now more than 70 and the number of neurologists specialising in MS has increased.

The RSS has funded education for all MS specialist professionals.

The number of therapists specialising in MS has increased and multi-disciplinary teams have been formed to provide support to everyone with MS.

Much of this has been made possible thanks to investment by the five funders, namely the DH and four companies, Biogen Idec, Bayer, Merck Serono and Teva Aventis.

In the role of administrator to the RSS, we have seen the Scientific Advisory Group struggle with many of the complexities of the scheme, but we remain convinced of the benefits of the scheme and are committed to ensuring that everyone with MS gets the treatment and services they need.